The iCAN-ACP study will adapt and pilot-test a number of advance care planning (ACP) tools in three settings: primary care, long-term care, and hospital care. The research teams will assess acceptability and usability of the tools from the perspectives of patients, families, clinicians, and partner organizations. A fourth team, the Diversity Access Team, will explore barriers to, and facilitators for, the implementation of a multi-faceted suite of ACP tools among marginalized groups of interest (ethnic, and sex and gender minority groups).
BCCPC is part of the Primary Care team that will focus on using patient and healthcare-professional tools to increase the uptake, impact, and access to advance care planning for frail or elderly Canadians in primary care. The project aims to determine the impact of interventions that identify patients in primary care who could benefit from immediate ACP and goals-of-care conversations. The team will also evaluate a care pathway supported by clinician conversation guides/training, and patient-facing tools and decision aids designed to increase the feasibility and quality of ACP conversations and goals of care in primary care.
Principal Investigators: John You, Michelle Howard, Doris Barwich, Gloria Gutman, Dev Jayaraman, Sharon Kaasalainen, Daniel Kobewka, Jessica Simon, Amy Tan, Tamara Sussman, Robin Urquhart
Primary Care Co-Investigators: Douglas Klein, Marissa Slaven, Carrie Bernard
Researchers: Dawn Elston, Neha Arora, Rachel Carter, Diana Cochrane, Abe Hafid, Carley Paterson
Dates: April 2017 – April 2020
Funding Agency: Canadian Frailty Network (Technology Evaluation in the Elderly Network), BCCPC
A subproject within iCAN-ACP, this study aims to integrate primary care with CB-ACP programs to evaluate the feasibility, acceptability, and implementation of a Primary Care Clinician-referred CB-ACP intervention to increase ACP behaviors among patients and their Substitute Decision Makers.
Investigators: Doris Barwich, Michelle Howard, Eman Hassan, Rachel Carter, Amy Tan
Dates: July 2019 – April 2020
A Cross-Cultural Conversation in Promoting Advance Care Planning within the South Asian Community
In this research project we will conduct a comprehensive evaluation of community-based interventions related to the understanding of advance care planning (ACP) delivered by trained South Asian (SA) volunteers utilizing the facilitator training curriculum and toolkit developed by BC Centre for Palliative Care (BCCPC). This project will assist BCCPC in understanding the South Asian community’s diverse perspectives of ACP as part of personalized health care that is influenced by social and cultural meanings of health and illness.
The objectives of this study are:
- To identify efficacy of the BCCPC-developed facilitator training curriculum and toolkit for the English-speaking population in training bilingual facilitators to deliver ACP information sessions in Punjabi, the most common spoken language by the Sikh Community, a sub-group of the larger South Asian population residing within British Columbia.
- To explore the experiences of trained bilingual facilitators while addressing ACP-related linguistic and social/cultural issues for the non-English-speaking population.
- To explore the experiences of SA community participants and their awareness of the topic of ACP.
- To explore the perspective of the hosting organization in reaching out to the SA community; the sensitivity of this topic; advertising for the session; identifying suitable bilingual facilitators interested in dialoguing about culturally sensitive topics like ACP; and feedback from the community.
Investigators: Savitri Singh-Carlson, Doris Barwich, Eman Hassan, Rachel Carter
Dates: July 2019 – June 2020
Improving palliative care in the home and community: building CAPACITI (Community Access to Palliative Care via Interprofessional primary care Teams Intervention)
The CAPACITI intervention has the goal of building the capacity of interprofessional primary care teams to deliver a palliative approach to care. It provides the foundational framework and active facilitation required to build primary care teams that deliver palliative care, while allowing flexibility to develop a local model, allowing for wide implementation.
The model involves a two-year multi-provincial learning collaborative with education, materials and tools, coaching, measurement support, high-facilitation and adaptation to the local context. It combines three evidence-based interventions and adapts them to the Canadian and local context: standardized education on palliative care; Gold Standards Framework; and Kelley’s Community-Capacity-Building-Model (CCBM).
Principal Investigators: Burge FI, Jakda A, Seow H
Co-Investigators: Barwich DB, Brouwers MC, Howard MI, Kelley ML, Kilbertus F, Kortes-Miller KM, Marshall D, Pond GR, Sinding C, Stajduhar KI, Urquhart RL, Winemaker S
Dates: 2019 – 2024
Funding Agency: Canadian Institutes of Health Research
Development and Validation of a Patient-Reported Measure of Compassionate Care
Patients with incurable and advancing life-limiting illness identify compassionate care as one of their greatest needs. Evidence implies a considerable theory-practice gap, with compassionate care espoused in policy guidance and healthcare reform but increasingly eroding from the bedside. Our research team and KT partners have developed a program of research aimed at understanding, measuring, and improving this reputed key ingredient of care from a scientific and patient-centered perspective. Having previously identified the key components of compassion, and having developed and conducted initial validation of a model of compassionate care in a CIHR-funded qualitative study of patients with life-limiting illness, this study will develop and validate a measure of compassionate care.
The goal of this study is to develop and validate a patient–reported measure of compassionate care in health care. This will be accomplished by addressing the following objectives:
- Assess the transferability of the compassion model to diverse patient populations in multiple healthcare settings.
- Develop candidate items to measure compassionate care.
- Assess validity of the items with data collected from patients and subject matter experts (SME), revise the items, and create a final version of the measure.
- Establish construct validity evidence for the final measure in a large and diverse sample of patients with life-limiting illnesses.
- Promote the uptake of the measure in healthcare research, policy, and practice.
Principal Investigators: Shane Sinclair, Thomas Hack
Co-Investigators: Barwich, D., Baxter, S., Chochinov, H., Cory, S., Dudgeon, D., Embleton, L.. Forbes, H., Garland, E., Hagen, N., Harlos, M., Heyland, D., Krawczyk, M., Lechelt, L., Leget, C., McClement, S., Puchalski, C., Quail, P., Raffin Bouchal, D., Russell, L., Selman, L., Singh, P., Sinnarajah, A., Stajduhar, K., Thompson, G.
Dates: July 2016 – June 2020
Funding Agency: CIHR